Cochlear Implant CT

Nicholas had the CT to look for the cochlear nerve yesterday. He needs to have this nerve in order to get the implant. His surgeon said he has never seen anyone without it so we have our fingers crossed. Everything went well and Mark was very pleased with the children's hospital this time. I'll call MUSC in a few days to see if they have the results. We go back down there to meet with the surgeon and audiologist Nov. 12.

He had PT today and did well for half of it. Then he had enough and let everyone know. Nothing new with PT, just continue to work on what we are doing.

The pulmonologist had to reschedule his first Synagis shot. Insurance approved 5 shots starting in Nov. so his appointment is now Nov. 6 instead of this Friday. Synagis is for RSV which is a respiratory virus. It is very dangerous for preemies if they get it because their lungs were so underdeveloped and their chronic lung disease. Synagis doesn't prevent RSV but it lessens the severity of it.

Nicholas is doing really well with his baby food. He sits up well in his high chair and has been eating a whole container 2-3 times a day.

Week turned out slow

Nicholas lucked out with two things this week. His physical therapist has an infection so she had to cancel. She has to get permission from her doctor before she can treat patients again so we aren't sure if she will be here next week or not.

The CT for the cochlear implant was scheduled for tomorrow but was changed to Monday. A nurse called for his history and after giving her his history and talking to a doctor, the doctor felt it would be best to fully sedate him with anesthesia. He will have to be put on a ventilator too. With his history of chronic lung disease and sleep apnea full sedation is safer.

He has been laughing a lot lately. We tickle him on his neck and stomach and he loves it. He also thinks he is a big boy and doesn't want to take naps anymore. This has caused him to be one crabby boy a lot and has messed up his sleep schedule. He fights sleep all day and finally falls asleep between 5-7 so he is up late.

11 months old tomorrow!

7 Months Adjusted

Nicholas is now 7 months adjusted, well he was on Sept. 25 but I didn't post. This week he had a check up with the neurosurgeon. That is the easiest doctor to go to for a check up. They just measure and feel around his head and ask us questions that would signal a shunt problem. His shunt is fine and he will go back in 3 months for another check up.

He had PT the same day as his doctor appointment so it didn't go too well. He didn't get his morning nap so he was tired and not wanting to work. His therapist still sees improvement each week. We can really tell a difference too. If he is awake and laying down he will move his head all around or leave it mid line. He used to turn it to the right all the time if he was awake or asleep. It is still turned to the right when he is sleeping but that is ok. He has also started to roll both left and right. He was only going to the right but now he does PT on his own and rolls from side to side.

His early interventionist is still looking for an occupational therapist for him. OT works on fine motor skills while PT works on gross motor skills. OT will help him with grabbing and holding objects. It will also help him use both hands equally. He favors his right hand and arm right now. He has no problem moving his left arm but he doesn't use it nearly as much as the right. He also turns it outward when he brings it to his face so his palm is facing out. We encourage him to use it and we turn it the other direction. He will put it in his mouth and use his right hand to hold it in place.

I scheduled our flu shots. We couldn't get in until Oct. 24. Nicholas will get the shot and I'm going to get the nasal mist since I'm a chicken when it comes to needles. Mark can get a flu shot free from work so he will do that.

Next week we have the CT scan to look for the cochlear nerve to make sure he can get an implant.

Physical Therapy

Not much is going on this week, only a PT session. Nicholas' therapist said he continues to improve each week. She said him not being able to hear effects his head control because he can't use sounds to balance his head. He has gotten better holding his head up during tummy time too.

Savannah

We went on our first over night trip last weekend. Nicholas' pediatrician gave us permission to stay at a hotel if we brought the pack n play and sanitized everything. We stayed in a suite so we had a fridge and microwave, that helped with bottles. We had a good time but needed a 3 day weekend because we ran out of time to do everything we wanted to do. It was also amazing how much stuff we had just for one night. First we stopped in Hilton Head Island to go to the outlet mall. We tried Nicholas in the stroller without the car seat to keep him cooler. He kept turning his head all the way up and to the side so he went back in the car seat. He seemed comfortable with his head like that but it didn't look very comfortable. He had a poopy accident there. I took him out of the stroller and his bottom was wet, I thought it was a pee accident until I took his shorts off and there was poop all over. That was really gross and we were changing him in the back of the Jeep so it wasn't very easy.

After the outlets we went to Savannah. That is our favorite place to go for a weekend. It is such a beautiful and historic city, we love it. We forgot to bring the baby carrier that you can wear and Savannah is not stroller friendly. There are a lot of cobblestone roads and sidewalks. We had to go down a big hill of cobblestone to get to the river front. Mark carried Nicholas while I tried to get the stroller down the hill. It wasn't very easy but we got there. We snuck through a hotel to avoid going up the cobblestone hill on the way back to our hotel. While we were getting dinner we had a screaming baby in a restaurant. Mark thought it was funny because we were that family for the first time. There weren't many people in there so it was fine. We went on a ghost tour and Nicholas did good for about half of it and then got fussy so I carried him during the tour. Little man is getting heavy! We tried to watch some of the Carolina game at an outside restaurant after the tour but Nicholas had other plans so we watched it at our hotel. The next morning Mark let Nicholas try some yogurt and he loved it. I bought some Yo Baby Yogurt and he has eaten just about the whole container each time. Overall, we had a good trip. It is a lot different traveling with a baby.

Nicholas went to the pulmonologist today. His lungs sound great but he is going to keep him on Flovent through RSV season. He gets his first Synagis shot next month and will get one each month until RSV season is over. He weighed 16 pounds today. Still no teeth!

Teething

We took Nicholas to the pediatrician yesterday because of his weird poop thing. He has been going like 5 times a day and it is a lot looser than his normal 1 time a day. The doctor said it is from teething and saw 2 teeth coming in on the top. His bad diaper rash has caused a yeast infection so she gave us a prescription cream to use twice a day and said to use Aquaphor at each diaper change. We have bought more butt stuff in the past 2 weeks than we will ever need! At least we will be prepared when he gets more teeth along with the weird poop. He weighed 15 lb. 9 oz.

10 Months Old

Physical Therapy

Nicholas is ten months old today. I can't believe he is going to be a year before we know it. He has an appointment at the pediatrician tomorrow because he has had a weird poop thing for about 2 weeks. He isn't acting sick and doesn't' have a fever but we would feel better getting him checked out. He still has bad diaper rash because of all the poop so I hope they can give us prescription strength cream. They told me to get an anti fungal cream like Lotrimin to use in the mean time. We should also give him butt soaks in water with baking soda 3 times a day. His physical therapist came today and she said his neck control is slowly improving. We are to focus on rolling and supported sitting.

Pictures and Videos

We got our new computer! We sure didn't take as many pictures as we should have but we will try to make up for it. Here are some pics and video from the past few weeks when we couldn't upload.

Not much news with Nicholas. His physical therapist did a few new exercises to strengthen his core muscles. The biggest thing he needs to work on is still his neck and head control. He will get there when he is ready. Just like everything else, it will happen in Nicholas time.

Not much going on

Nicholas is doing well. Nothing really has been going on. He is getting physical therapy once a week and he really needs to increase his neck strength. We are doing exercises to work on that. He has his first case of diaper rash right now. Poor little bum. It is looking a lot better than it did a few days ago.

Our third attempt for a new computer should work so hopefully we will have that soon and be able to post pictures again. The first computer was lost in Fed Ex land then the second one was lost in Dell land. We canceled after they said they had no clue where it was and and ordered from some where else. I just got an email saying it has been shipped so I'm crossing my fingers this one shows up. Here are some old phone pics from his last surgery and one from yesterday.

All Better

Nicholas seems to be recovered from his surgery. His incisions look good and still have a little bit of scab to them. It doesn't seem tender or to bother him. He regressed a little with his head control since we weren't able to do his exercises for about 2 weeks. We started them again and physical therapy comes out on Tuesday. He had 3 weeks without PT because she was on vacation and then we had the shunt malfunction. Hopefully he will get back on track quickly. He is trying so hard to roll over but can't get it yet. He gets both arms in the direction he wants to roll and turns his head face down but he can't get his hips over. He even swings his top leg out to get some momentum but it hasn't worked. Hopefully soon. Everything has been pretty slow for us. We don't even have any doctor appointments until mid September. September also brings RSV season so Nicholas will be on lock down and we can't take him anywhere so he doesn't get sick. Our new computer should be here this week so we will be able to post pictures again.

Back Home

Nicholas came home from the hospital Saturday afternoon. He did so well with this surgery and is recovering well too. Both a PICU nurse and a children's hospital nurse commented that his lungs sound great and not like most chronic lung disease babies. It was also nice to see our favorite NICU nurses who visited us in the ER

He seems to be back to his old self. He is eating just about the amount he was before the shunt malfunction. We canceled physical therapy again and aren't doing his exercises right now. We are going to give his tummy some time to heal and start PT again next week. He doesn't seem to mind the incisions on his tummy and has a ball during floor time. Last night he was trying so hard to roll over. He had his top arm all the way over to the other side and was turning his head face down. He just couldn't get his hips over. Mark shaved the rest of Nicholas' head on Sunday. We saved the hair and Mark put a note in the baggie saying who the Cubs were playing. We have a little baldy now!

Shunt Revision

We took Nicholas back to the ER yesterday for another CT and x-rays. The ER doctor had neurosurgery diagnosis him this time and it was a shunt malfunction. I told the ns about Monday's visit to the ER and the flu diagnose. He said that parents of kids with shunts usually are right when there is something wrong and know more about them than the ER doctors. It is nice to know I knew what I was talking about and was right on Monday, but I really think the ER docs need to know this too. The neurosurgeon was able to tap out 50cc of cerebral spinal fluid and his soft spot went down and he was acting like he felt a lot better. The ns said that since he was able to get fluid out the part in his brain was working and the problem was with the tubing. He was admitted to the PICU last night. They did surgery this morning and found a blockage in the tubing. They were able to replace it and they put it in a different spot in his abdomen. Nicholas has 2 cuts on his tummy- one from removing the old tubing and one from putting in the new. The good news is that they didn't have to go into his brain. They still had to prep his head so half of it is shaved. The poor guy's hair just grew back from the last revision. He was off the vent right away which is so wonderful. I was worried about that since he had such a hard time coming off of it last time. They are giving him a little oxygen but he was satting 97-100 with it not on his face so he is good with his breathing. They want to keep him in the PICU for at least 12 hours so he may or may not spend the night there tonight. I will know more later and hopefully he will be home in a few days.

Back to the ER

We are headed back to the ER for another CT. His pediatrician didn't feel comfortable with his head so she recommended we go back. We totally agree and never felt that the stomach flu was the right diagnosis. Other than a possible shunt malfunction his pediatrician said he is doing great.

ER Visit

We took Nicholas to the ER last night. His soft spot was bulging, he vomited his dinner, and he was crying and whimpering like we've never heard him do before. Those are all signs of shunt problems and when they appear we have to take him to the hospital. He vomited 6 more times at the hospital. They took x-rays to follow the shunt tubing from his brain to his stomach and did a CT scan of his brain. His shunt is working just fine. They diagnosed him with the stomach flu. The doctor said that any pressure in his stomach will travel up the shunt tubing and make his soft spot swell even though the shunt is working. Thank goodness it wasn't a shunt problem. Nicholas has been a crabby little boy. He was up just about all night and is crying and whimpering still. He hasn't vomited since we got home from the ER. We are giving him Pedialite today and are going to see the pediatrician tomorrow. Nicholas also turned 9 months old last Saturday. Can you believe it, our little boy is getting so big. We had to cancel physical therapy today but she will be back next week. Our new computer is coming today or tomorrow so I will be able to post pictures again soon.

ABR #3

We went to MUSC in Charleston today to finish Nicholas' Auditory Brain Stem Response hearing test. He slept and we were able to finish it this time. He had no response at any frequency up to 100 decibels, which is the loudest the test goes. It is equivalent to a helicopter or a rock concert right next to your ear. So this means he has profound hearing loss and is deaf. We also met with the surgeon who does the cochlear implants. He feels the implant is the way to go and we agree. I brought the CT scan from his shunt surgery and they were able to see that he has a cochlea, which is good. We still need to get an MRI done so they can see the cochlear nerve which is needed to be able to hear with the implant. The doctor said he has never seen a deaf person without the nerve so he strongly feels he will have it and will be able to get the implant. We are going to do the MRI here in Columbia in October and we go back to MUSC to meet with the surgeon and the audiologist in November. We will have to try hearing aids first because the FDA and insurance requires the trial before a person can get the implant. The hearing aids won't allow him to hear though. Surgery for the implant will be Jan. or Feb. when he is around a year adjusted.

Goodbye Grandma

Well, we are at the end of Grandma Terri's visit. Nicholas had a great time with her and so did Mark and I. Nicholas went shopping with us twice this weekend and was a good boy. He is doing well holding his head up. Grandma says she can already see a difference in his head control just from when she got here until now. Our physical therapist is on vacation next week so he won't have a work out with her. We are doing his exercises and he is doing well. We are going back down to Charleston to try to finish the ABR hearing test next Thursday.